ThisAbility: 10 Life Lessons I Learned Growing Up With Pompe Disease

This November I’ll be 35 years old. That would be 5 years more than what I initially thought I’d live to. When I was 10 I started showing symptoms of what would be Pompe Disease. Of course at that time we didn’t know what it was called. It would take several doctors and 6 years to eventually find out what I was sick of.

I’m not here to talk about Pompe Disease specifically. If you want to know more about it you can head on here to read about it. Please finish this first though.

In my 35 years of living, 25 of which were spent battling a dreaded disease I learned a lot of things. Lessons that I know have made me a much better person. Lessons that I know will help other people as well. That is the main purpose why I wrote this article.

Dealing with disability or in my case multiple disabilities opens you up to a different perspective about life. I believe that this has helped shape me as a better person. I’d like to share these lessons and insights with you. By no means are these ranked by importance.

1. Family matters

One of the things I’m most thankful for in life is that I’ve been blessed with such a good family. I’m not talking about just my immediate family (mom, dad and brother) but I’m always blessed with a terrific extended family.I am where I am today largely in part because of the love and support I got from my family. Early on when I found out I was sick most of the weight of my sickness fell on my parents shoulders. They were the ones who fully understood what was wrong and what was going to happen. I was quite oblivious to the fact that my sickness was terrible and the prognosis was not that good.My parents told me what I needed to know but held back on some things that would not help. They did this until I was at the right age to fully comprehend and could deal with my sickness.They also gave me every opportunity to succeed and do better in life even if people told them it was a long shot.

I remember one doctor who we consulted telling my mom that they should just put me in a special needs home because it would be difficult to raise me. My parents would not hear of it. They raised me themselves and made sure I had the best childhood and life possible.

My brother also paid a huge part in shaping how I’d turn out. In more ways than one he seemed to be the “older” brother.

When I first started to use a wheelchair, my brother was one of the persons who made it feel more comfortable. When we were at a mall, he’d push me around and often times making a game or race out of it.

My brother was very patient and understanding not just towards me but also during the times that my parents had to give their attention to me. He never complained or made it hard for my parents.

Apart from my parents and sibling, my extended family also played a big part. Most of my uncles and aunts were truly supportive. Pitching in to help my parents out when they could, providing moral support and other things.

For almost 10 years when I was growing up my dad had to travel a lot. He was away most of the time on business. One of my uncle’s lived beside our house. He would take us out on weekends for ice cream or burgers when my dad was away. He became a second dad to my brother and I.

One of the best things my uncle did for me was teach me how to drive! I was about 12 then and a complete car nut. He would take me out to a secluded set of roads near where we lived and taught me how to drive. He didn’t mind that his car was new. That was a dream come true! Now I look back at it and smile that I at least got to drive before my disease took over and I couldn’t walk anymore.

2. You gotta have faith

Faith is important. Whether it’s faith in God, in your family or yourself, faith is one thing that people need to develop. Believing in something or in people is essential.I personally believe in God. I believe that there’s a supreme being where we all came from. I believe that he’s looked out for me over the years. Not all people believe in the same thing but I do.I believe in people. I have faith in my family and friends that in time of need they will be there.I believe that the world is essentially good. I know this because of the countless family, friends and even strangers who helped me along the way. I believe in the goodness of people.

3. Education is important

I think the one of the best things my parents have ever done for me was to ensure that I finished school. A lot of people seemed to be surprised that I actually have a college degree. Given the extent of my disabilities most think that I didn’t even bother to finish school anymore. For a time there I thought I wouldn’t.I remember when I was in my teens and just recently found out about the possible outcome of my disease, I thought to myself that I should just stop school. I’m probably not going to live past the age of 30, so why bother getting an education. I can spend that time enjoying myself and doing other things I actually liked to do.I told my dad what I thought. He said, “Well, what if you do live past thirty, what then?” He explained further that we never know what’s going to happen in life. You can’t predict the future.True enough, I’m 35 and I see myself still being around for quite a few more years. I’ve benefited a lot from my education. I am employed and contribute to society because of it. I am able to participate in the world around me because I know things.

My dad told me that because of my disability I would never be able to rely on my physical abilities to land a job or support myself. However, I can rely on my mental abilities to get ahead and become a productive member of society. I am thankful that I listened to him. I am able to look at myself in the mirror and have a sense of dignity because I know I am worth something.

4. Best way to get help is to help yourself

I’ve gotten a lot of help along the way while dealing with Pompe disease. Most of the time I didn’t even have to ask for it. Help was just extended.I’ve often asked myself why people were so eager to help me out and some people found it to hard to get help from others. I realized one key difference. People who helped me out saw that I was trying my best to do what I can to improve my situation. This in turn “inspired” them to help me out.They saw that the help they extend to me would not be wasted. They saw the effort I was putting into my life and that made the difference.Some people ask or worse demand help from others but they’re not doing anything to address their problems. That doesn’t encourage people to help because they get the feeling that they’re the ones trying to solve the problem instead of the person they’re helping. This might work once or twice but it gets tiresome. Especially if they see that the person they’re helping is not really putting in much effort except when it comes to asking for help.

So if you want people to help you out, show them that you’re worth helping.

5. Dream other dreams

When I was a kid I dreamt of becoming a race car driver. I think God heard me wrong when I prayed to him. He turned me into part-man, part-car instead!Seriously, I had several dreams when I was growing up. You hear people say that if you set your mind to it, dreams come true. Work hard at it and you can achieve it. Sadly that’s not true. No matter how much effort you put into it, some dreams just can’t come true. Countless kids dreamt of being Michael Jordan sadly there can only be a handful who can be like Mike.That doesn’t mean that it’s over though and that our lives need to be miserable because we didn’t achieve our dreams. One of the things I learned is to dream other dreams. There are countless other dreams to be had and some of those are achievable. Each person can realize another dream that can come true. If a dream doesn’t come true, choose another one and go for that.

6. The world is not flat

I mean this both figuratively and literally. When you spend most of your time on a wheelchair you will feel all the bumps in the road that most people get to skip. You feel every elevation change and every uneven surface.Life is not easy. It’s not always going to be a bed of roses. There’s going to be a lot of ups and downs, highs and lows. We need to accept it as such and learn to deal with the uneven surface.Pompe disease emphasized a lot of problems and obstacles most people take for granted. Simple things as doing daily living activities like taking a bath, brushing your teeth, eating, etc. Those are constant challenges or bumps in the road that a person in my situation deals with on a daily basis. We learned that the everyday world is not as easy as it looks. Those are obstacles that we just need to learn to work around with.

7. The world won’t stop for you

Contrary to what most people think the world does not revolve around us. It doesn’t follow our timeline nor does it care if you have challenges or not. It just keeps going.Life is finite. It will end at one point. Time keeps going. We can’t hit pause, we can’t rewind or fast forward. Life just keeps playing. So it’s important to keep playing along with it.I know that I have problems, some of which are extremely hard to deal with but I can’t just sit down, hit pause and take a break. Life will keep going. I need to keep pushing forward or I’ll get left behind.So I learned not to dwell on things. I try to keep going and keep pushing through. Trying to find ways to solve my problems so I can keep pace with life around me. I can’t tell the world to stop just because I’m having a bad day.

8. True strength

Whenever I think about strength, I think about my mom and dad. My mom especially. My parents have been amazing throughout our journey with Pompe Disease. They were both in their 30s or right about the age I am now when they found out that their eldest son had a dreaded disease.They were just really getting into the groove of life. Promising careers, establishing a good life not just for them but for their children too. This devastating news caught them off guard.Some parents would have faltered. I’ve seen marriages broken up because one parent couldn’t handle a sick child. It takes immense strength and courage to face a problem head on and not give up on it.My parents fought through financial, emotional, physical, psychological challenges in the 20 something years of knowing their son had Pompe Disease. From medical bills, sleepless nights of worrying if their son will make it to adulthood, the pain of seeing their son being picked on in school or the frustration of seeing their son not being able to do the things that other children could do, both my parents faced those challenges head on.

Their love and support for me never faltered. I never got a sense that they wanted to give up. I think that taught me what true strength meant.

9. Believe in yourself and others will believe in you

If there’s only person who believes in you it should be you. It all starts from that. When you can’t even believe in yourself it’s hard to convince others to believe in you.One of the biggest challenges I have is getting people to see past the physical disabilities. To most people who don’t know me I’m just a man in a wheelchair who probably can’t do much. That’s until they get to know me and see that I’m much more than that.The first real job I had was working for a small company that my dad, a cousin and I put up. I had a job by default because we started it ourselves. About a year or so into it I started to wonder if I could get someone other than a relative to hire me.So I told my dad that I wanted to try and see if I could do it. Of course he said yes. So I sent out my resume and went to several interviews. I got rejected of course. Some people didn’t even give me a chance.

I eventually got a job though. Someone took a chance on me and hired me. He even accommodated my situation and allowed me to work from home most of the time. Up to this day I am grateful to that person. I don’t think he would have hired me if I didn’t believe I could do it. I had to convince him I could and before I could do that I had to believe in myself.

So the first person you need to convince that you’re worth something is yourself. The rest will follow.

10. It’s ThisAbility not Disability

I’ve always been brought up to be a positive person. I learned to look at the bright side of life. Some people see the glass half empty. I see it half full. It’s cliché I know but it’s the truth.One day I was at the place where I do a lot of my thinking, the toilet, I said to myself, I want to help convey the message of positivity to people. How do I do that? I wanted to find a way that is apt for my situation. It hit me! From now on when people ask I won’t tell them I have a disability, instead I will tell them I have ThisAbility!I know I can’t do a lot of things. There’s nothing I can do to change that. It’s done. No matter how much crying and pleading I do it won’t change it. I do however still have certain abilities. I needed to focus on that and highlight those instead of the things I can’t do. I need to turn a negative into a positive.Disability is such a negative term. The prefix “dis” means a negation of something. In this case it’s a negation of abilities. I didn’t want that to define who I am. I want to focus on the good. So I started with the word itself. I turned disability into ThisAbility. A word I made up that means focusing on your abilities.

There’s still a lot of things I can do in this world. I needed to focus on that and show the world that despite my challenges I can still do things and be productive.

Two people can look at the same thing and see it differently. Some people look at the glass half full and some half empty. I learned that how you look at things or your attitude towards it influences the outcome a lot.

My parents always taught me to look at the positive side of things. In any given situation there’s going to be good and bad. So rather than focusing on the negatives I learned to focus on the positive. That’s helped me a lot over the years.

These are just some lessons that I’ve learned over the years of dealing with Pompe Disease. The disability brought about it gave me a unique perspective in life. I don’t claim that these things are new or that they’re earth shattering. I just learned that most people take these lessons for granted and that sometimes looking at life from another perspective helps to amplify the importance of these everyday life lessons.

Thank you for allowing me to share these with you. Hopefully it has helped you in someway. I’d appreciate any insights or questions you might have about what I wrote. Just leave me a message on the comments section below.

5 Replies to “ThisAbility: 10 Life Lessons I Learned Growing Up With Pompe Disease”

I am amazed, my husband (Cliff Pheifer) is running out of strength, not just physical but mental. He to has lost the ability to do many things he loves. I try to tell him how amazing he is because he did not get that kind of support as a child. Most people professional and family thought he was lazy, he is the furthest thing from lazy! Pompe’s is something you live with and adapt to. Problem I have, watching him loose. Knowing it is never going to get better. So in a nutshell watching him die.

Hi Debbie,
I found that it helped me a lot to talk about Pompe with other people. People I work with, interact on a daily basis or complete strangers. It helps them understand why I do things the way I do that in turn takes away the negative thoughts they have.

Another thing is I have accepted the fact, we’re all gonna die. Pompe or not our time here is finite. Don’t think of it as watching him die. Encourage him to live one day at a time and enjoy the time you have. That way, whatever happens you’ve made the most out of your time with each other. It’s hard I know but we all need to keep trying.

Hi Dickoy! The life lessons you’ve shared are very true to all people undergoing challenges. Thank you for sharing your insights. Most of the things you said hit me and realized that everybody goes through problems in life but we need to move on. Sometimes it just takes to hear what others are going through to know that you’re not alone. All of us goes through pain, suffering and challenges, it’s how we deal with those that matters. Thank you for always being there for me! You taught me a lot of things and helped me go through difficult phases in my life. You’re one of the strongest people I know and I’m very proud of you!

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About Fight Pompe

Welcome to my corner of the virtual world. I mainly put up this blog to chronicle my fight against Pompe Disease. A rare genetic disorder. Apart from that I wanted to write about things I've learned going through my experience, stuff I love which includes design and a bunch of other stuff. I hope you enjoy reading my entries. Check out my about page for more details.